Mapping the Disability Trap
Long Hauling (8/8)

Mapping the Disability Trap

When Jason DaSilva, director and disability rights activist living with multiple sclerosis, is separated from his son, he has to make a decision: stay in New York and receive the medical care he needs, or move to Texas to be the father he wants to be.

In February 2013, I received the greatest gift of my life, the birth of my son. I watched him grow into a clever, energetic, and humorous little boy. He embodied the best qualities of his mother and his father; in all the ways a parent could dream. And even though I have primary progressive multiple sclerosis, and am fully quadriplegic, my condition didn’t hinder my ability to be a father to him. His mother and I provided a loving and supportive environment.

When he was three years old his mother and I separated. She and my son moved to Austin, Texas, leaving me behind in New York City. I was determined to move there too, to co-parent our son. So, I visited Texas to investigate what life for a Medicaid-dependent person with disabilities would be like. I quickly found the quality of health care in Texas did not come close to what I receive in New York. If I were to move to Texas, I would be confined to a nursing home, the only place Medicaid would cover the 24-hour care I need. Driven by the resolve to be near my son, I checked myself into a nursing home to find out what this new life might be like. 

After being there for several days, I had some conclusive answers. I would have to give up my personal aide and therefore a lot of my freedom. Aides in nursing homes are expected to help multiple people simultaneously. The most basic tasks of life — showering, shaving, food preparation, eating, going to the bathroom, checking emails, answering phone calls — would be significantly more difficult, diminishing my independence as a father, my personal well-being, my health, and even my life expectancy. 

In New York, because of the one-on-one care I receive, I am able to keep up with my career as a filmmaker and disability activist. Yet determined to be near my son, I began researching states surrounding Texas to see if they had adequate Medicaid coverage. I discovered that Medicaid coverage varies widely by state, creating huge hurdles for sick and disabled people like myself who need to move to another state, especially those of us who need in-home, round-the-clock care. The disparity in coverage amounts to institutionalized discrimination against aging and disabled people, and it prevents me from truly having a choice about where I can live.

These past two years, living during the COVID-19 pandemic has been disorienting and strange for us all. But for me, on some level, it felt normal to work from home or stare out my window, perpetually waiting. My friend told me over the phone, “Now everybody knows what it’s like to be in your shoes”. Though in a lot of ways my life remained unaffected by the pandemic, in other ways it did not. At the start of the pandemic three of my care aides contracted COVID. I was lucky and did not. As they slowly teetered off, one of my more consistent care aides and I decided it was safest to just shut the door and not have anyone else come. This was the extent of my difficulties with COVID, but generally it was quiet.

I did have my difficult days, and hours upon hours of time to think and reflect. Watching the world shut down at times made me feel even more stuck and isolated than I already was. The weighted feeling of despair hit me as thousands of deaths were being reported, daily, worldwide. I often thought of my loved ones, and depression clobbered me as I felt the intensity of being so far away from them, particularly my then seven-year-old son. It’s true that the distance between us was already great, but during this time it became even greater as uncertainty about when I would next be able to see him swarmed around me. When my son first left, I felt utter sorrow. Not to sound cliché, but it felt like a piece of my heart had been ripped out. He was gone, and I did not know when I’d see him again. The pandemic brought this feeling back in full force. It left me feeling stuck and as if we lived lightyears apart. 

As I dwelled in my heightened feeling of isolation and distance from my son, the news about COVID running rampant in nursing homes terrified me. The thought, “that easily could’ve been me”, crossed my mind. I can never truly know what residents, staff, and their loved ones went through, and are still going through. But watching the news raised for me new questions about the unfairness of the Medicaid system, and I wondered how many of those deaths could’ve been avoided if people were able to have the 24-hour care they needed at home. I was, and am, incredibly grateful that my benefits afford me to have personal aides that come to my home.  But if I’d made a full move to Texas this would not be the case.

As the never-ending bad news seemed to pour in, I played the waiting game. I tried to convince myself that things would get better soon, and I would be once again reunited with my son. But three months passed, then six, and I became despondent. Time began to compress, and it felt like years were passing. I spent my days staring out my apartment window, feeling more isolated than ever. FDR drive, usually a traffic-heavy parkway, was empty, apart from emergency vehicles speeding by. I longed to be with my son. Like the rest of the world, I was not in control of the situation and I could do nothing but wait and wait and wait.

My birthday passed. Happy Birthday to me. There I was 42 years old, living in an empty apartment hundreds of miles away from my son. I hit the point where I couldn’t take it anymore and did the opposite of what CDC guidelines were advising. I hopped on the first plane I could to Austin. I rented an apartment near where my son lived and, after quarantining for 14 days, I was able to walk to see him every day. I was elated to be near him again. Although we couldn’t go anywhere because of COVID, we found our own ways to have fun. We played with LEGOs, the piano, and he’d ride on my wheelchair when we went for walks around the block. Everything felt like it was the way it should be. I was with my son every day. Additionally, my risk of COVID was lessened by having a single care aide with me rather than a rotating few who have other clients, thus increasing exposure risk. Those were the happiest 8 months I had in a while. But in the long run I had to return to NYC. It was heartbreaking to leave my child, but as I’d learned before, moving to Texas was out of the question because of Medicaid.

Life has presented me with many challenges. It oftentimes surprises me that I have the tenacity to confront the obstacles that are thrown at me. Each time I somehow endure and grow from them. Regardless of my disability, each day I strive to spread awareness of the damaging discrimination against the disabled community of the United States and beyond. Despite the challenges I have to face, I remember what’s truly important: my son. Having a physical disability has infringed on my rights and ability to fully be a parent to him. Sadly, I am not the only one. Because of the exponential gap in Medicaid coverage from state to state, I fear other people with disabilities also find themselves unable to be with their families. 

If this pandemic has taught me anything it is that time is precious and the loss of one’s right to be with those they love is a detrimental disruption to memories and time. As much as I’d love to live closer to my son, there is currently nothing in place that allows me to do so and maintain my independence. I would lay down my life for him but moving to a nursing home would require me to give up everything — my work as an advocate and filmmaker, my ability to be a parent to him, my freedom. I would spend hour upon hour sitting in a room unable to do anything until someone comes to help me. 

As we begin to experience shifts in these pandemic times, things remain unchanged for me. I continue to face the challenge of isolation and distance from my son. I hope that if nothing else, this pandemic has been a wakeup call to everyone about how important it is to have the freedom and resources to be near the ones we love. I hope that having experienced what I experience everyday will help change policymakers’ views about equalizing and raising the standards of Medicaid coverage across all 50 states. But until that day comes, I will have to continue my advocacy work and enjoy every precious moment of time that I do get with my son.


Editor’s Note: All images are stills from Jason DaSilva’s short film, How Health Care Makes Disability a Trap (2018), which originally appeared at the New York Times. Animations by We Were Monkeys Inc.

Filed Under: Articles & Essays

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Jason DaSilva is an Emmy Award-winning director, producer, writer, and disability rights activist. He is founder of the AXS Lab, AXS Map, and the AXS Film Fund, which work to advance disability rights and accessibility.

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